autismdad

What It’s Like to Be the Father of a Child With Autism

The dearth of support, resources and networking for dads is just the tip of the iceberg

Joey was a self-described “typical slacker Gen X-er” when his wife got pregnant with their first child, Ben, in 1997. Still, he anxiously awaited the birth, excited to meet the human he’d helped produce, and was thrilled when a “gorgeous” boy emerged “with 10 fingers and toes.” Ben hit all of the anticipated developmental benchmarks over the next two years, pointing and making correct references to people in his life, but also demonstrated peculiarities like obsessively piling up spice bottles in the kitchen. “The kid had an incredible sense of balance and hand-eye coordination,” Joey recalls.

His adroitness wasn’t limited to equilibrium either. In fact, Joey and his wife began referring to Ben as an “absent-minded professor” because he could memorize entire books they’d read to him — Blue’s Clues, Winnie the Pooh, Berenstain Bears — recognizing words on the page and later acting out the entire story at bedtime. “That kind of recall at 2 and a half is astonishing,” says Joey, a 52-year-old former schoolteacher in Florida, who was “disgustingly proud” to tell people that his toddler could essentially read. “He had a fascination with symbols, letters and numbers and would draw street signs over and over and over again. I started to think, My god, this kid could be a little genius!

But there were also concerns. Namely, Ben had difficulty playing with other kids and seemed to be more content walking around the perimeter of the yard lost in his own head than playing games. He was equally apathetic toward joyous childhood holidays like Halloween. He’ll grow out of it, Joey optimistically thought. After all, Ben wasn’t beating kids up, he just liked to read. Soon thereafter, though, Ben’s pediatrician diagnosed him with autism, explaining the “absent-minded professor” traits to be a form of hyperlexia, the “smart kid disorder,” defined as “a precocious ability to read words before the age of 5.” (Hyperlexic kids have extremely strong visual and auditory memory and, like Ben, can recite books verbatim through “echolalia,” the repetition of noises and phrases despite not being able to communicate effectively.)

Over the next decade, Joey and his wife struggled to parent Ben, who developed a penchant for highly disruptive behavior like pulling fire alarms, emptying out box stores on multiple occasions. When he was 13, for example, in a packed Target on Black Friday, he separated from his parents and was found by security running down the aisles completely naked. He essentially required 24/7 attention. All the while, the compulsive behavior persisted. “He had an obsession with Band-Aids,” Joey says, explaining Ben would give himself repeated paper cuts to warrant covering his entire body in adhesive bandages. “There’s no more helpless, empty feeling than seeing your kid deliberately hurt themselves,” Joey explains. “I’d have done anything to fix whatever was going on, but I had nothing left in my bag of tricks.”

Joey and his wife fought constantly, blaming each other for Ben’s condition. Joey says they only stayed together because they couldn’t afford a divorce. “I felt really isolated,” he recalls despondently. And despite visiting a carousel of doctors, therapists and child-development specialists, no one knew how to help. “Dads are supposed to have all the answers but I had none,” Joey says. “My wife found some support groups for mothers of kids on the spectrum, but there was really nothing for dads. It was a very dark time.”

Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. While it can be diagnosed at any age, symptoms usually appear in the first two years of life. Per the Diagnostic and Statistical Manual of Mental Disorders, people with ASD have “difficulty with communication and interaction with other people, restricted interests and repetitive behaviors and limited ability to function properly in school, work and other areas of life.” Autism is known as a “spectrum” disorder due to the wide variation in the type and severity of symptoms. And while ASD is a lifelong condition, early intervention can significantly improve a child’s ability to function.

Despite ongoing research, ASD rates have drastically risen over the past 30 years. In 2018, the CDC determined that approximately one in 59 children is diagnosed with ASD. In 2000, meanwhile, that number was one in 500; and in 1990, one in 10,000. ASD is now more common than Down syndrome, childhood cancer, cystic fibrosis, multiple sclerosis, blindness and deafness, with boys four times more likely to be diagnosed than girls. There’s no single known cause and no cure, placing an extraordinary physical and emotional burden on parents, who are four times more likely than parents of neurotypical kids to be diagnosed with depression and anxiety, according to Victoria Boone, author of Positive Parenting for Autism: Powerful Strategies to Help Your Child Overcome Challenges and Thrive and executive director of the Hamilton Center, a leading provider of behavioral services for ASD children and their parents in L.A.

As Joey found, while it’s long been easy for mothers of autistic children to find support — and much research has focused on ASD mothers’ experience — there’s virtually none for dads. “Fathers of autistic children have been a left-out group for a long time,” Boone tells me, suggesting it’s the result of us not expecting fathers to be involved in special-needs care. “It has to do with hyper-masculinity and fathers expected to be tough and strong, so they’re less able to be expressive about what’s going on.”

And so, dads like Don suffer in silence. For him, the nadir was a typical morning at a Dunkin drive-thru with his 13-year-old autistic son Tristan (a pseudonym, as are some of the other names of parents and children throughout). Their order was taking forever, and Tristan doesn’t like to wait. Although the child-safety locks were on, Don had forgotten to lock the windows and Tristan was attempting to open the door from the outside and spring from the car. Don reacted quickly with a stern “No!,” closing and locking the windows. Incensed, Tristan began punching Don repeatedly in the face.

“At nearly 6-foot, he’s really strong and can pummel the crap out of me,” the 32-year-old full-time caregiver tells me, noting Tristan also recently unloaded on him at IKEA. It’s necessary to physically hold Tristan down for a period of time when this happens. Don, though, worries people think he’s physically assaulting his son, who doesn’t like to wash or comb his hair and insists on dressing himself so his clothes are often inside-out. “I understand that to some people it might look like I’m not taking care of him,” Don explains. “But I just protect myself until he calms down because he’s in a state of irrationality and doesn’t know what he’s doing. I’ve got bruises and cuts all over my body.”

Don and his wife had to hang gym mats in Tristan’s bedroom because he regularly bangs his head against the wall. As such, if he’s having a violent outbreak at home, they steer him into the bedroom for safety. In a public space, however, there’s nothing to do but wait for it to pass. And it does pass. At Dunkin, for instance, when the food finally arrived, they drove away and Don handed a donut to Tristan, who happily ate it as though nothing had happened.

While Don and I are on the phone, I hear a series of thwacks. “He’s hitting me right now because he knows I’m talking about him,” he explains. More troubling, Tristan has begun hitting his 6-year-old sister as well. There’s also been significant property damage — in the form of destroyed flat-screen TVs and holes in the wall from Tristan’s head and fists. “He’s obsessed with water, too,” Don says. “He likes to run all the faucets, take the head off the shower, fill cups and dump them all around which causes significant damage.” And while Tristan is potty-trained, he’s currently regressing and regularly urinates and defecates wherever he chooses. (Don was cleaning poop out of Tristan’s closet when I called.)

“We’re in the process of taking out a second mortgage to repair the holes in the walls,” says Joey, who recently retired from a 20-year teaching career to care for Ben. “It’s not cute like when he was a kid. The hardest thing is that I don’t know what’s going on in his head when he suddenly lashes out.”

Some insight was provided in 2010, when Naoki Higashida, a 13-year-old nonverbal Japanese boy with severe autism, used a customized letter board and computer to write a memoir entitled The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy With Autism. “Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive,” Higashida explains of the meltdowns confounding Joey. “And it’s this feeling of helplessness that sometimes drives us half crazy and brings on a panic attack or a meltdown. When this is happening, please just let us cry and yell and get it all out. Stay close by to keep a gentle eye on us and stop us from hurting ourselves or others.”

ASD actually isn’t a neurological issue, explains Raj Dasgupta, assistant professor of clinical medicine at the University of Southern California’s Keck School of Medicine, whose 6-year-old son Alex is autistic. “There’s nothing medically wrong with most individuals who have autism,” he tells me. “Their heart is in the right place, literally. Their lungs are breathing good. Their brain isn’t malformed. It’s not genetic or auto-immune. It’s nothing that happened because of the lack of oxygen during birth or an embryological malformation. But there’s something…,” he sighs, trailing off. “I wish I knew what it was.” (Studies have shown that paternal ages are associated with neurodevelopmental disorders like autism, and all but two of the dozen fathers I spoke with were over 34 when their child was born.)

Personally speaking, Dasgupta’s biggest paternal fear is someone bullying his son. The other day, he had the urge to kick the soccer ball around with Alex, but when they arrived at the park, Alex preferred to lie on the ground, repeating unintelligible phrases. “I saw a couple kids laughing, and there was definitely a part of me that wanted to go tell off those little kids, but that’s where I have to be the adult and understand that they simply don’t understand.”

Brad, a 49-year-old attorney in L.A., has a 5-year-old son who doesn’t even realize when someone’s picking on him. Kids shove him to the ground and take his things, but Christopher just smiles as if they’re supposed to. “He either decides he likes being on the ground, or he’ll go do something else,” Brad says. “He’s completely oblivious to other people’s negative emotions. I think about the traditionally masculine tropes of wanting your kid to, at the very least, stick up for himself, but I’d rather him be happy.” He does worry, though, wondering if there’s “room in the world for a gentle, non-combative boy like this?”

The phrase I hear repeatedly from fathers is, “If you know one child on the autism spectrum, you know one child on the autistic spectrum.” That’s because the disorder varies significantly in presentation and severity, with no two persons’ experience the same. The American Academy of Pediatrics recommends that pediatricians screen children for autism at 18 months, and most of the fathers I spoke to received a diagnosis by age 4. “At about 18 months, the one thing we noticed was he drooled a lot,” says Kevin in Pennsylvania of his now 17-year-old son, William. “We began to notice he wasn’t even attempting to speak.”

“Our first indication was that my son wasn’t latching, meaning that he couldn’t figure out how to get milk from a breast,” Brad says. “That’s because the way his autism expresses itself is that he has a harder time feeling certain things. One indication of that is he jumps a lot because he has trouble knowing where he is in space. If you jump and your feet smash really hard on the ground, you can be pretty certain where you are in space.” (Higashida says that when he’s jumping, he can sense his body parts really well, which makes him feel “so, so good.” He adds, “People with autism react physically to feelings of happiness and sadness, so when something happens that affects me emotionally, my body seizes up as if struck by lightning. So by jumping up and down, it’s as if I’m shaking loose the ropes that are tying down my body.”)

Reactions to the autism diagnosis ranged, but nearly all the fathers mentioned some form of denial. Mike, a 32-year-old in Canada whose 4-year-old daughter was diagnosed with ASD earlier this year, says he vehemently resisted having the tests done because he didn’t want to learn the results. Don says he was in “complete denial” and stuck in his head. “Not knowing what’s next is the scariest thing,” says Alex, a 44-year-old in Philadelphia with an 8-year-old autistic daughter. “It’s not an illness that can be cured like pneumonia or the flu. I still don’t know what’s next, except that nothing’s going to be the same.”

Eventually, though, the denial subsides says Kevin, noting that eventually “you accept that it’s the hand he was dealt and you move on from there.”

It scares Dasgupta that some dads are reticent about getting a diagnosis. If ASD is on the table, he says the first thing to do is to rule it in or out as quickly as possible and begin early intervention speech and occupational therapies. “I’m half-Indian, half-Filipino, and I know in certain cultures, fathers may be embarrassed by these diagnoses. The ‘not me’ response is often what happens with parents when they hear the word ‘autism.’ ‘Well, how do you know? Where’s the proof?!?!’ they’ll demand.”

Others dads speak of mourning the loss of the child they anticipated having. “You mourn in advance that you won’t throw a ball, talk about the Steelers, read comics, meet prom dates, move him into his dorm room, have a grandson to carry on your name or watch Star Wars together,” Brad says. “Sometimes you get those things — later than everybody else — but once you get the diagnosis, there’s a bracing reality that maybe you never will. An autistic child is like a never-ending wound.”

“You get thrown these things and you either lean into them and adapt, or you spend your life running away from them,” Joey says. “It’s like packing for a vacation to Italy, but your plane gets diverted and you end up in Holland in the middle of winter. And you’re like, ‘Fuck! I don’t even have a coat!’ So what are you gonna do? Nobody signs up for this, but you make it work.”

Roland’s son Sean was diagnosed at 9 years old with what traditionally would have been called Asperger’s syndrome: super intelligent, high-functioning, but missing certain social cues. (Asberger’s is now filed under the umbrella term of ASD.) Doctors told Roland, a 66-year-old actor in L.A., that the sides of Sean’s brain were developing at different speeds. At 9, intellectually he was reading and comprehending like a college student, but emotionally, he was more like a 6-year-old. Roland realized it was him who needed to adjust, though. “My kid was going to think differently than I expected,” he realized. And so, he committed to give Sean the tools he needed to understand how the rest of the world functions.

“We’re going in with the mentality that we’re going to be dealing with this for the rest of our lives — and that’s okay,” says Mike. “If I could set one goal in my life, of course it would be to be able to allow my daughter to live independently at some point, but I’m really not banking on it.”

“Tristan will be living with us as an adult,” Don tells me matter-of-factly. “I accepted that years ago.”

Joey agrees, admitting, “I know I’ll be with him forever.”

The key to successful fatherhood, Mike says, has been learning to meet his daughter on her level. When he hands something to her, he makes sure to establish eye contact so she learns that. He’s grateful to have socialized health care in Canada, with experts educating him on such matters. “I’ve learned to be more methodical in the way that I communicate with her,” he says, “You don’t realize how much you take communication for granted until you don’t have the luxury anymore.”

Scott Long, a 53-year-old comedian in Indianapolis, says the toughest ages with his daughter Maddie were from 6 to 10, when she had four years of the terrible twos. “We were always scared that she’d open a door and wander out into the street. So everything had to be on lockdown.” Tristan eloped when he was 7, with near-tragic consequences. The family was leaving their apartment to go see Santa at the mall. Tristan got out ahead of his parents and was distracted when he reached the car and walked straight into the street. “A van hit him,” Don recalls. They ended up in the hospital for the night, but he fully recovered. (“Elopement” is the term for an individual with autism who wanders, runs away from or otherwise leaves a caregiving facility.)

Please, keep an eye out for us,” Higashida writes.

Doing so, however, means subverting career aspirations. Prior to permanently leaving his job in the financial field to care for his daughter, Alex often used the Family and Medical Leave Act (FMLA), which allows up to 12 work weeks of unpaid leave annually to care for a seriously ill family member. “When I went back to work after the FMLA was over, I felt invisible,” he tells me. “They can’t legally punish you for it, but you do feel like your coworkers feel as though they can’t count on you. You end up sacrificing, and it’s a little crushing.”

For Neil, an attorney in Florida, being the father of an autistic child has meant turning down jobs that better align with his morals because they didn’t pay as much. “I can’t chase the unicorns that I wanted to pursue when I went to law school,” he explains. “I’m constantly afraid of losing the job I do have because of the time demands I have as an autism dad, which isn’t going to fly at most firms.”

On the flip side, it’s not uncommon for fathers of autistic children to use work as a healing balm. “Mostly, it’s the sense of relief that I’m at work,” says Brad, who admits to looking forward to “easing into the mundane office life that everyone else complains about” because, while perhaps tedious, it’s far less physically and emotionally traumatic than his home life. “I’ve occasionally hired a babysitter to go to work on the weekend or come home late from work even though I didn’t really have to,” he says, noting that on the days when he’s most worn down, he gets a pit in his stomach around 3 p.m. in anticipation of going home. “It’s a shameful feeling, but I’m just doing what I need to keep my head above water until I can dive back in.”

William Stillman, known as the “Autism Whisperer” for his innate ability to understand and interpret children on the spectrum, calls this a “time of reckoning” for dads. “They have to gradually reconcile and attempt to manifest unconditional love,” he explains. “Even though this child isn’t what they were expecting when they were expecting, perhaps he or she serves a purpose for being born into this family. Acknowledge then that perhaps this child is presenting you with an opportunity.”

Roland definitely has seized this opportunity. He says the most authentic relationship in his life is now with his son. “He’s learned how to deal with me as I’ve learned how to deal with him,” he tells me.

While Joey’s now 22-year-old son Ben still lives at home (and likely will forever), he’s also matured into an impressive artist (granted, one who draws much of his inspiration from Blue’s Clues). Joey hopes to someday monetize Ben’s talents, recognizing that he’s worthy of a more meaningful job than bagging groceries. Either way, Joey says, “As long as he wants to paint, I’ll be with him in that process. I’m a much better man than I was 23 years ago, thanks to Ben. His happiness is my entire motivation.”

“Maddie has been the greatest teacher in my life — by far,” agrees Long. “If there were a cure for autism, I’d want it for Maddie, but not for me, because I can’t imagine loving her any more than I do now. This wasn’t something I wanted to accomplish, but having an autistic child took me out of my narcissistic self, and that feels good. That feels really good.”